National Organization for Rare Disorders Issues Statement on American Health Care Act

WASHINGTON, May 1 -- The National Organization for Rare Disorders issued the following statement in response to the latest version of the American Health Care Act:

"In recent days, House Republicans have offered up what is known as the 'MacArthur amendment' as a potential compromise for their proposed replacement of the Affordable Care Act (ACA), the American Health Care Act (AHCA).

"In February, we at NORD put forward a set of 'Principles for Health Coverage Reform' to which Congress and the Administration should adhere in order to avoid harming rare disease patients in their repeal and replace efforts.

"After careful review, we have determined that the MacArthur amendment does not adhere to these principles, and in fact makes the proposed legislation even more problematic to our patients.

"The MacArthur amendment allows states who participate in a newly-created Federal reinsurance program (called the Patient and State Stability Fund) or create their own high-risk pool to apply for waivers that exempt insurance plans in the state from having to comply with community rating. In addition, the amendment allows states to set their own Essential Health Benefits (EHB) categories rather than complying with the ten Federal EHB categories.

"We do not support this amendment as it would jeopardize the health and wellbeing of rare disease patients across the country. Community rating prohibits insurers from charging individuals higher premiums based on health status. Without a community rating, pre-existing conditions protections are rendered moot, as insurance companies will once again be capable of charging higher premiums to those with pre-existing health conditions. Community rating is essential to maintaining access to quality and affordable healthcare coverage for rare disease patients.

"While the Patient and State Stability Fund is intended to remove the incentive for insurers to medically underwrite our patients, this fund will not be sufficient protection. The amount of funding appropriated to the federal invisible risk sharing program will likely not be enough to cover the exorbitant costs associated with grouping those with the highest medical expenses in one program. This principle extends to the state-administered high risk pools as well. Prior to the ACA, state-administered high risk pools were unsuccessful largely due to the fact that they were not adequately funded.

"In addition, the amendment could lead to some states choosing to discard crucial EHB categories. Both the prohibition on annual and lifetime caps as well as the maximum out-of-pocket caps apply only to the EHB categories. If the EHBs are turned over to states, states could choose to allow insurers to once again set annual and lifetime caps on medically necessary services for rare disease patients by only mandating coverage of certain EHBs. States could also allow insurers to set prohibitive cost-sharing amounts without any out of pocket cap. We strongly oppose this measure as it is unacceptable to once again expose rare disease patients to these draconian caps and cost-sharing requirements.

"Finally, the MacArthur amendment does not address any of our concerns with the original AHCA. Federal funding of Medicaid would still be substantially weakened by per capita caps and block grants, resulting in states potentially delaying or outright refusing coverage for necessary care under Medicaid. Rare disease patients seeking expanded Medicaid coverage would still be turned away after 2019, and additional Federal assistance for the 1915(k) Community First Choice program would still be removed.

"We remain unconvinced that the continuous coverage proposal will adequately incentivize healthy individuals to enter the market to stabilize premiums, or that the tax credit structure will provide enough assistance to low-income individuals with rare diseases seeking coverage.

"As always, we wish to emphasize our commitment to assisting Congress and the Administration as they navigate ACA repeal and replace. At this time, we do not support the MacArthur amendment, and by extension the American Health Care Act, as it does not adhere to our principles for health coverage reform. With continued dialogue and collaboration, we hope to be able to support legislation that improves the lives and wellbeing of rare disease patients."